Published paper seeking to identify subgroups of developmental vulnerability among infants and toddlers that would make children eligible for early intervention and estimate the likelihood of each subgroup receiving parent-reported early intervention.

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Common NS-CSHCN questions

The National Survey of Children with Special Health Care Needs is a national survey that was conducted by telephone in English and Spanish for the first time in 2001-2002. A second survey was fielded in 2005-2006, and a third survey was conducted in 2009-2010. The survey provides a broad range of information about the health and well-being of children with special health care needs in the United States. The data is collected in a manner that allows for comparisons between states and at the national level. Telephone numbers are called at random to identify households with one or more children under 18 years old. Each child in the household is screened for special health care needs using the CSHCN Screener. In each household, one child was randomly selected to be the subject of the interview. The survey results are weighted to represent the population of non-institutionalized children 0-17 nationally and in each of the 50 states plus the District of Columbia.

In 2009-2010, a total of 372,698 children under 18 years old from 196,159 households were screened to identify those with special health care needs. A total of 40,242 detailed CSHCN interviews were collected during 2009-2010; at least 750 interviews were conducted in each state and the District of Columbia. The 2009-2010 NS-CSHCN was administered in English, Spanish, Mandarin, Cantonese, Vietnamese and Korean.

The NS-CSHCN is currently being integrated into the National Survey of Children’s Health. Data from the NSCH will continue to provide detailed information on children with special health care needs, but the NS-CSHCN will no longer be conducted as a separate survey. Initial data from the newly designed NSCH is expected in 2017.

The sampling and data collection for the NS-CSHCN surveys were conducted using the “State and Local Area Integrated Telephone Survey” or SLAITS. This approach was developed by the National Center for Health Statistics (NCHS) to collect information on a variety of health topics at the state and local levels.

The DRC makes it easy to receive technical assistance for questions related to understanding data and using our website. Just ask us a question. The DRC staff makes every effort to respond to your email within 2 to 3 business days.

Yes. Free, easy to use, fully cleaned and labeled data sets are available from the Data Resource Center. All NS-CSHCN questions and data shown on the DRC website, including demographic and constructed health indicators, are available in SAS and SPSS formats by clicking on the Request a Dataset link.

In most cases, there is absolutely no cost associated with the Data Resource Center Indicator Data Sets. Exceptions may apply to for-profit organizations. The original SAS version of the data set (without constructed indicators) can also be downloaded at no cost from the NCHS website: www.cdc.gov/nchs.

The NS-CSHCN is being merged with the National Survey of Children’s Health. It will not be conducted again as a stand-alone survey. Instead, information on children with special health care needs will be available through the NSCH. The CSHCN Screener is included in the survey so all results can be stratified by children with special health care needs. Data from the new NSCH will be available starting in 2017.

Yes, the NS-CSHCN includes the estimated prevalence and number of CSHCN in each state’s population, and the estimated percent of households in each state with children who have one or more CSHCN under 18 years old. In the 2009-10 NS-CSHCN, at least 750 CSHCN interviews were completed per state, providing detailed information about each state’s CSHCN population overall, and for subgroups such as age, race/ethnicity, family structure, household income, etc.

Currently, the public use data files for the surveys have state identifiers and a binominal variable identifying children living in the metropolitan statistical areas (MSA) with greater than 500,000 persons in each state. This indicator is suppressed whenever the population for the MSA or non-MSA area is less than 500,000 persons.

Zip codes are collected by the National Center for Health Statistics (NCHS), however, these data are not released in the public use data file due to confidentiality restrictions. It is possible to analyze these zipcode data on site at the NCHS’ Research Data Center. Interested researchers must first submit a proposal to the Research Data Center.

There are three files that comprise the 2009/10 NS-CSHCN: Household File, Screener File, and Interview File:

-Household File: Each household is surveyed for location, household language, number of adults in household, number of children in household (including sex of child), and household income. Therefore, the denominator for this file is AMONG HOUSEHOLDS (n=196,159).

-Screener File: For each child in the household, the CSHCN Screener is conducted to determine CSHCN status. This file includes if and how a child met the CSHCN Screener. Therefore, the denominator for this file is AMONG CHILDREN SCREENED (n=371,617).

-Interview File: Children identified in the CSHCN Screener File as CSHCN are then given the full CSHCN Interview (only one CSHCN per household). This includes detailed information on the CSHCN population. The denominator for this file is AMONG CSHCN INTERVIEWED (n=40,242). All MCHB outcomes and indicators are AMONG CSHCN.

The DRC distributes the Interview File, with household and screener variables merged into the dataset. Therefore, information on household demographics and CSHCN Screener are included.

Important Note: The dataset received from the DRC has a denominator of CSHCN INTERVIEWED, with weights to represent the CSHCN population as a whole. Therefore, all statistics calculated using a dataset provided by the DRC or the DRC online queries are AMONG CSHCN.

NS-CSHCN Methodology

The sampling and data collection for the NS-CSHCN were conducted using SLAITS. SLAITS is an acronym for the State and Local Area Integrated Telephone Survey, and is an approach developed by the National Center for Health Statistics to quickly and consistently collect information on a variety of health topics at the state and local levels. Other national surveys collect through the SLAITS program include the National Immunization Survey and the National Survey of Early Childhood Health.

What questions are in the surveys? Can I see the final questionnaire that was used? Who is in the survey, how are they chosen? Are the results representative of US children? Answers to these questions can be found in the Survey Methodology section of our website.

“Medical home” refers to medical care for infants, children, and adolescents that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. The medical home concept was first proposed by the American Academy of Pediatrics (AAP) in a 1992 policy statement which was updated in 2002. The AAP definition of medical home emphasizes that a medical home is "not a building, house, or hospital, but rather an approach to providing continuous and comprehensive primary pediatric care from infancy through young adulthood, with availability 24 hours a day, 7 days a week, from a pediatrician or physician whom families trust."

The need for an ongoing source of health care—ideally a medical home—for all children has been identified as a priority for child health policy reform at the national and local level. The US Department of Health and Human Services' Healthy People 2010 and 2020 goals and objectives state that "all children with special health care needs will receive regular ongoing comprehensive care within a medical home" and multiple federal programs require that all children have access to an ongoing source of health care.

The term “HRSA region” refers to the ten standard federal regions through which the Health Resources and Services Administration (HRSA) organizes and conducts its administrative activities. The 50 States, the District of Columbia, and the US territories are each assigned to a specific HRSA region.

The Health Resources and Services Administration (HRSA) is an agency of the U.S. Department of Health and Human Services. It is the primary Federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable. The Maternal and Child Health Bureau, which sponsors the NSCH and the NS-CSHCN, is one of five HRSA bureaus.

The ten standard Federal Regions were established by OMB (Office of Budget Management) Circular A-105, "Standard Federal Regions," in April, 1974. The Standard Federal Regions used by HRSA are: